INS clears way for ailing girl

Chilean to be considered for rare transplant

May 08, 2002|By Oscar Avila, Tribune staff reporter.

Melannie Veliz's cystic fibrosis is dangerous enough, but the 11-year-old was facing an even bleaker future because she is an illegal immigrant. For months, medical officials have refused to consider her for a lung transplant, fearing the organs might be wasted if her family were to be deported to Chile.

On Tuesday, after months of frenetic fundraising and lobbying from political heavyweights, the Immigration and Naturalization Service announced it would grant Melannie's family one year of protection from deportation.

With the temporary legal status in place, a St. Louis hospital finally will evaluate Melannie as a candidate for a double-lung transplant, perhaps as early as Wednesday.

Melannie's case illustrates a quirk of the American health-care system. Because illegal immigrants can receive paid medical care only in emergencies, patients who need organ transplants must wait until their health conditions become life-threatening.

But unlike other high-profile local cases involving illegal immigrants--including Ana Esparza, a Mexican immigrant who received a liver transplant donated by a Miami hospital--Melannie's supporters weren't asking for the St. Louis hospital to donate care.

Instead, the hospital's objections came from officials' reluctance to dip into a scarce supply of lungs for a patient who might be unable to receive adequate follow-up care in her home country.

Melannie's grateful father, Christian Veliz, said the INS decision clears one major hurdle for the family, even though his daughter still has a long medical battle ahead.

`A huge sigh of relief'

"This decision is like a huge sigh of relief," said Veliz, who lives in Aurora.

Cystic fibrosis is a genetic condition that causes the buildup of thick mucus in the lungs' breathing passages. The disease makes Melannie prone to lung infections, and doctors fear her lungs may eventually fail.

Already, she must pause for breath when speaking because her lungs are operating only at 30 percent capacity, her doctors estimate.

The family entered the country legally in 2000 to seek medical advice on a special humanitarian visa, but it expired last year. Melannie, her parents and her 5-year-old brother theoretically could be deported.

Doctors at the University of Chicago Cystic Fibrosis Center determined that Melannie's only option is a rare double-lung transplant. The nearest hospital that performs the procedure is St. Louis Children's Hospital, but hospital officials said they were reluctant to consider her.

"It sounds cruel, but there is such a shortage of lungs that you don't want to give lungs to someone who might not have a future in this country," said center director Dr. Marc Hershenson, who has consulted regularly with colleagues in St. Louis.

Melannie's supporters have raised more than half of the estimated $450,000 needed for the transplant and follow-up care, including hundreds of dollars from a penny drive by classmates at Smith Elementary School in Aurora. Donations are being accepted at Banco Popular in Aurora.

From her hospital bed Tuesday, Melannie said she became depressed after being readmitted last week when doctors founda tear in one of her lungs. The tear caused the lung to leak and fill her chest with air.

But her eyes light up when talking about her dog, Gaspar, or one of her favorite books, "A Light in the Attic." Her brother, Christofer, cheered her up even more by blowing bubbles across her hospital bed.

A fighting spirit

Family members say they are astounded by a fighting spirit that earned her the class award for perseverance. Her teacher says she is amazed that Melannie can maintain A's even while missing weeks of class at a time.

But the illness is clearly taking its toll. "I'm ready to go home," Melannie said. "Coming back to the hospital all these times hasn't been fun."

U.S. Sen. Dick Durbin, U.S. Rep. Luis Gutierrez, former U.S. Sen. Paul Simon and even the Chilean consul general in Chicago have lobbied immigration officials on Melannie's behalf. Gutierrez said he also plans to introduce legislation that would make certain undocumented children eligible for Medicaid if they need organ transplants.

For now, the INS decision will give the entire Veliz family protected status for a year with the possibility of annual extensions. Melannie's parents will be unable to work, and the family will remain ineligible for most forms of public assistance.